How weird childhood environments may affect autism presentation

The intersection of genes and the environment may matter more to autism presentation than parents like to admit

In the wake of Donald J Trump’s proclamations on Tylenol (paracetamol for those of us in the UK), and single dose vaccines, rather than the well-tested and known-to-be safe combined MMR (which helps ensure compliance – missing a dose means kids can still die of these once nearly eradicated diseases), I’ve been think a lot about how autism presentation is affected by environmental choices.

Most scientifically-minded individuals know that autism has an overwhelmingly genetic connection. Look around your family when your child is being diagnosed and the traits of kooky uncles, reclusive aunts, verbose or controlling parents – and the odd maths-genius sibling – and you’ll know exactly what I am talking about.

We all know that better diagnosis and greater awareness is leading to more diagnoses – the so-call ‘autism epidemic’ in Trump’s overinflated parlance. And yet, I can’t help but feel that there might be something in the water after all – and not Fluoride, which RF Kennedy has next on his list of potential suspect – again – deemed scientifically safe, but that’s not stopping this conspiracy-fuelled administration from acting on its hunches, evidence-based or not.

Yet, no one is stopping to consider the sweeping changes that have been made to childhoods over the past half century. In our rush to end childhood mortality (3% of babies did not survive their first year in 1959, with hygienic childbirth practices, infant formula, antibiotics and vaccines all contributing to reducing infant mortality figures to their current levels, which in the UK still lag behind behind many other OECD countries, especially for black and ethnic minority groups) many have failed to consider the harm that may have been inadvertently caused along the way.

We know, for example, that childhood allergies are up, now affecting 40% of children in the UK, a figure that has doubled between 2008 and 2018. Scientists are now pointing the finger at ‘weird childhood environments’ for triggering overreactive immune systems in the young. Once harmless substances, such sesame or corn, have become potential killers to kids whose immune systems now see these things as threats. And yet there’s no big movement against the potential culprits of these deadly antagonists: C-sections, formula milk, antibiotics, ultra clean environments, processed food…it’s too much to consider that these things might pile up to make inflammation (and overreactive immune systems) the norm, rather than the exception.

All of these now-normal childhood environments or circumstances are historically abnormal. Each one leads to weird microbes setting up home in the infant’s gut, (where the majority of the immune system is housed), creating an inflammatory enviroment that overreacts at a hairtrigger (not least a triple dose of de-natured virus as ‘look over there’ Trump would have us believe.)

It seems no coincidence that autism (which, like allergies, has a genetic root) is also linked to a hyperactive immune system (as well as amygdyla) with autoimmune disease – where the body’s immune system starts attacking itself – such as psoriasis and type 1 diabetes, is overrepresented in individuals with autism.

After a decade chasing both an autoimmune diagnosis and a neurodiversity one, it came as no surprise to me that, at 44, I finally got both. Not only am I autistic, I also meet clinical threshold for attention deficit disorder (auDHD for the uninitiated), traits which, in women, can be exacerbated in perimenopause (which I’m definitely in the midst of). I also have psoriasis, a whole body condition that has seen me lose hair, have mystery joint problems and skin rashes over a the course of decade – a fact that has caused me considerable suffering, anxiety and frustration due to years of medical gaslighting and wrong diagnoses.

After a stressful summer in which my stepmother became very sick (it turned out to be Pick’s dementia) and I was drinking and smoking to cope (I told you I was a reprobate!), my skin flared, leading to itchy welts all over my body. Even when I stopped abusing myself, the damage was done. My body now overrereacts to any whisper of stress, small glass of wine, or starchy meal. I knew I had to reduce my inflammation and find the culprit, and after a week off gluten, everything’s calmed right down.

Gluten was implicated in autism presentation when Jonah was young – we tried a gluten and casein free diet with him as a toddler. It made not a jot of difference in his meltdowns and behaviour, but caused me a lot of stress and expense, buying and cooking alternatives and making packed lunches and homemade pizza. It also risked mimimising what he *would* eat, which, with ASD kids can be tricky enough.

When Ava came along, at the same time as the financial crisis and baby-led weaning, it all became too much and I just went with what I felt was best at the time – a lot of soups, stews and chillies – as well as frequent peanut butter sandwiches – which I still make a lot of today. For more family food ideas, check out my YT channel – I’m teaching Jonah, now at uni, how to cook by proxy in three minute shorts – if anything will help his ADHD brain learn to cook, it’s having it all at triple speed.

Though the gluten-free diet fell by the wayside, my erstwhile breastfed progeny were weaned on as much organic fresh natural produce as we could afford, and I supplemented with probiotics and fish oils and all the stuff you are *supposed to do* And it all, kinda, turned out okay.

During their childhood, I was investigating my own gut health after years of skin rashes and fatigue (for which I blame years of antibiotics ) and I tried a GAPS diet of bone broths and fermented food, lost a lot of weight and my skin rashes all cleared up. So, I was always mindful of the link between diet and health, but never wanted to implement anything too stringent with my own kids. After all, Ava could be so stubborn I was sure if I triggered her PDA with food interventions, she could choose to starve herself to death. Better they were fed, even though sugar clearly made Jonah loopy (he may have had a natural birth, but the antibiotics I’d taken in my teens and early twenties meant he’d swallowed a load of yeast when he came out – which meant he was legit getting drunk every time he ate something sweet as it fermented in his gut!)

Fast forward 15 years and Jonah’s left home. He’s in touch sporadically, mainly when he wants a cash bump. Last night, though, he messaged to say he was in a lot of pain. He’s had a couple of injuries this comp season, and has so far been resistanat to my calls for him to tweak peanut butter on toast diet, and use a red light to help reduce his inflammation.What would I know, I’m just his mother!

This time, however, when he said his back was hurting after he’s been climbing it set off alarm bells in my brain. “I’m too young for this pain,” he said. My granddad (the illegitimate half-Norwegian one) had ankylosing spondilysis, an auto immune condition where the vertebrae of the spine start to fuse, and so does my father. There’s a strong genetic link for this too.

Add to this, my now 78-year old mother (whose limbs were so chunky as a result of post-war formula feeding you can still see the chub rings on her arms) now has rheumatoid arthritis and can barely walk. My 45-year old sister (who like me has a gender dysphoric daughter) has a neck problem so stiff an osteo wouldn’t touch it (she did listen when I prescribed red light – she says it’s helping. I suspect she has a gluten intolerance – she had long Covid, and has now lost a load of weight thanks to reflux surgery, which has imrpvoed her quality of life inordinately.) My cousin on my mother’s side, who was recently also diagnosed autistic, aged 50, has Crohns (she had an accident as a child that meant she too was given all the antibiotics too) – an autoimmune disease that attacks the gut.

So, regardless of diet, the autoimmunity count is looking pretty high in my immediate family. My real fear is that my son’s climbing career could be nipped in the bud by some kind of axial spondyloarthritis impelled by his bready teenaged diet – he exists on peanut butter on toast, despite my recent remote attempts to teach him how to cook.

“The way to halt disease progression is a LOW STARCH DIET” I told him, having done my online research into this years ago. “You want to do Keto, basically,” I said. This is what cured my own auto immune symptoms the first time round, although no doctor would back me at the time, and now, with a sic year old to feed, life has somewhat got in the way. You’d think, as an athlete, a mainly meat diet wouldn’t be too hard for Jonah to swallow, but with no propensity for cooking for himself, it’s also a way of life that can get expensive quickly, especially for a student.

Either way, breastfeeding (for which he will never likely thank me, but which I gave all my children a significant stint) may be protective against this particular type of spine-stiffening arthritis, which mainly affects males, though females may linked autoimmune symptoms. It’s known to be caused by a particular gut microbe – the klebselia bacteria, also famed for causing stomach ulcers, which can be kept at bay by reducing sugars in the diet. Interestingly, the NHS website fails to mention this useful nugget of information, preferring to concentrate on drugs. But, with the disease very much in the family photo album, surely it make sense to take preventative action now?

Try telling that to my son, who doesn’t eat eggs or cheese (a hangover from the GFCF gluten/casein-free diet we trialled as a toddler) – and is only just getting to grips with how to use an oven. He isn’t buying keto as a lifestyle choice yet, but maybe he just needs to get there on his own – hopefully before too much damage is done in the meantime.

It’s a bit like trying to tell Ava, my gender dysphoric teen, that she should look into gene testing for ovarian cancer because Tom’s mother’s mother died of it. Understandably, Ava doesn’t want to hear it even though it could save her life.

The point is, what’s lurking in the family album should serve both as a warning and opportunity to women hoping to reduce inflammation in their body to reduce the risk of autism (and auto immune conditions) before they get pregnant. However, controlling for ‘weird childhood environments, including before birth isn’t all that easy. Socio economic status remains a big predictor of all health outcomes, not least, because it impacts the extent of the ‘weird childhood envrionments’ to which we subject our children – most of us just don’t have the choice! But it may have a real impact on autism presentation.

Take my own family for example. Of my father’s siblings – one became a bus driver, the other, Jean, (who looked not unlike British comidian and crossdresser Eddie Izzard) married an Indian chap and had three kids, all of whom were significantly overweight, like their parents and who lived on a diet of processed food from Tesco, where they worked.

The bus drivers’ kids, of whom both were premature, one became a geography teacher, the other – the ‘preemier’ preemie – had social and learning difficulties throughout life. Bus driver died in his 60s.

Of Jean’s two girls, one was Anglo-appearing, one Indian-appearing. The Anglo-looking one, Anna, who happened to be objectively attractive (Grandad’s mother, Muriel, was a Chatham, erhem, good time girl, so had to have been relatively comely to have attracted the Norwegian sea captain, even for a one night fling!). Like Anna’s own mother (Jean, keep up!) who was briefly an opera singer, she had features of narcissism) and married a local lad not known for his brain power. They had two boys, both severely autistic: one aggressive, with global delay; the other, who was treated for a brain tumour. Both will likely live on the state.

The Indian-appearing daughter, Lisa, who was generally kinder and more pleasant, if a bit of a people pleaser (and who was diagnosed with juvenile arthritis) had one son – blonde, blue eyed – to whom, she gave birth naturally and breastfed before splitting up with the child’s father, who got custordy: from what I know, her son is high functioning autistic, whatever that really means.

Eddie (sorry, Jean. Can you tell she wasn’t my favourite aunt? She once bought me a toothbrush for Christmas) also died in her 60s. I’ll say no more. On the other hand, my mother’s sister, Auntie Camilla, to this day cooks all her food – and bread – from scratch. She remained slim throughout her life (she’s pushing 80) and though she may be a touch OCD, she remains well and sprightly into her late 70s, having recently emigrated to New Zealand. My mother’s mother made it into her mid 90s, despite a bout of TB that disrupted both my mother and my aunt’s childhoods, and remained slim as a bird until her death from a stroke. So much for nature verus nurture.

Back to my father’s side, Dad – an inventor (so clearly autistic) and company CEO (so enough of a narc to have left my step-mother (my mum left when I was a baby) – marry a Korean lady who spoke no English that he met on a business trip after two weeks, ship her and her two kids to the UK, and have another child the week Jonah was born – is going strong at 70, and save for his arthritic hands and knees, moved to a mainly keto diet 30 years ago when he started travelling to Asia for business.

His third child – my half sister – has Ehlers Dahnos (an autoimmune disorder associated with hypermobility) and endometriosis. Connective tissue disorders are common with autism. The last I heard, my dad was having an affair with a Thai woman who was only a few years older than this half sister. I stopped speaking to him after that. This was around the time I was pregnant with Lana, now 7, and I was in no mood for any more family drama. What all this says about my own genome really doesn’t bear thinking about, but I live to break the cycle. And my own kids are, thankfully, only half me.

I always chuckle to myself about young women wanting to have a baby girl because a daughter carries a full X chromosome from her mother in law, so you’d better get on with her, as it’s very likely a daughter will have a fair few of your MIL’s traits. As well as being an avid painter, my own mother-in-law is generous to a fault, loves a bargain and never knowingly wears a dress.

What’s interesting about the weird childhood environments we are all now exposed to is, as well as driving inflammation, they can fuel PCOS symptoms in women. That’s androgen insensitivity to you and me: driver of teenage acne (tick) and facial hair (lately, tick – my mother-in-law (hi Pru!) and I have exchanged notes on this – epilating is the only way). Higher circulating testoterone in pregnancy could, in theory, produce male- spectrum brains in offspring, regardless of gender (see Simon Baron Cohen’s theory on extreme male brains). Did I mention I had extremely hairy legs when I was preggo with Ava, my gender non binary? I got lasered after that, so I don’t know how I fared in that respect with Lana, my youngest, who is, by contrast, is obsessed with makeup and sparkly shoes.

Ava, however, like Mother in Law Pru, also draws. But she’s also a maths whizz (I never caved on pronouns) and she wants to be an engineer. She never shaves her legs (which is apparently quite normal for whatever-the-hell-generation she is part of) and has a deep voice. These days, she tells me she’s ‘queer’ and is currently on the fence as to which gender she’s attracted to. Either way, I’m struggling to keep up, ideologically speaking, although I am forced to remain neutral, whichever way she may swing.

What does it say that in the decade between her birth and my third child, Lana, I did GAPS, healed my gut and lived keto (moreorless!). I had no trouble falling pregnant at 37 (so much for PCOS!) and after a natural birth, breastfeeding yadyadada, and a forest school kindergarden which had opened i nthe neighbourhood since my eldest two were young. Lana, now almost 7, has shown no sign of ASD to date.

This, despite a kinda stressful pregnancy because Tom was not on board for most of it (after two ASD kids, I don’t wholly blame him). But I got a lot of sunshine and was prescribed hormone replacement therapy the minute I gave birth to help offset the post natal depression that’s common in women, like me who was diagnosed with PMDD shortly before my third pregnancy – all are co-morbid with autism spectrum.

Now Lana is nearly seven and the hormones are racheting up, she has been throwing a fair few wobblers of late. It’s also fair to say her diet also went to shit over the summer and I’ve been trying to sort out the inflammation that came along with it ever since.

Going gluten-free felt like a breakthrough for my psoriasis – even though it’s a breakthrough I’ve had several times in the past. Gluten is noxious, hiding in plain sight because sourdough or pasta often looks like a healthier choice that a highly processed gluten-free alternative. And yet for the many of us on the spectrum with gluten sensitivity, it destroys health over many years, with investigations often failing to identify the culprit sitting on the side of so many meals. At least going gluten-free is easier than keto especially when feeding a six-year-old, and the benefits for her behaviour and mood, not least her long term health, may well outweigh any downsides. This way, she can still have GF bread and pasta and it shouldn’t inhibit her diet in any way. Over on YT, I’ve been having fun experimenting with making gluten-free everything, but while my skin is starting to clear up, my back is aching and I’m starting to wonder if starch may still be an issue for me, after all.

Perhaps if I’d never taken antibiotics, or maybe if I’d been breastfed, I wouldn’t be having so many health issues now, although I’ve little doubt my dubious genes have made life more complicated.

Either way, I can’t control what happened in the past. What I can control is the trajectory of inflammation in my body for the future.Whether a pile on effect of environmental factors is exacerbating autism presentation in your child, or whether cutting gluten help prevent a lifetime of health problems – the jury is still out.

And, rather than feeling blamed for their child’ s autism presentation (as weird childhood environments are so ubiquitous and linked of socioeconomic status anyway), I want parents to feel empowered to make small changes that could alter the trajectory of their child’s health.

Reducing processed foods, white flour, sugar, stress, starch even on a modern, messed up micobiome is will have a positive effect on inflammation. It might – along with probiotics, positive reinforcement, playing outside more, and getting some sunshine – have some effect on their autism presentation. Parents can control this. They can also seek to reduce exposure to things that may trigger an overreactive immune system, like going for a natural birth, breastfeeding, and avoiding cortisol driving stress – all easier said than done.

What’s clear enough – even if Trump is going way off script -is, even if your child’s body has been primed for overreactivity, getting a vaccine’s not going to trigger it anymore than catching a cold – and there’s more aluminium in formula milk, so don;t feed me abu=y of that toxin claptrap. Whatever else you can control, you can’t control a virus, so get your kid vaccinated (and use the goddam Tylenol if they get a fever – it won’t hurt!). Neither causes autism.

What is in no doubt is that genetic make up increases the likelihood of autism, but environmental factors could play a deciding role in how autism presents itself as microbiome differences and inflammation piles up over the longer term.